“Chronic Lyme” is colloquially regarded as symptoms of Lyme disease (caused by bacterium: Borrelia burgdorferi – or other Borrelia spp.) that linger for protracted durations after both diagnosis and medically-appropriate treatment of Lyme disease.
What most people think “chronic Lyme” is…
Many individuals think that “chronic Lyme” is Lyme disease that is still lingering in the body even after conventional medical treatment (e.g. antibiotics) – for the appropriate duration.
In other words, these individuals are convinced that the antibiotics given by doctors were somehow not-powerful-enough to eradicate Lyme-inducing bacteria (Borrelia burgdorferi) from the body.
Legitimate “chronic Lyme” infection
There’s a small percentage of individuals (usually persons diagnosed in late-stage disease) who may not achieve a curative effect with first-line therapy – and thus may require: higher dosages of antibiotics; different antibiotics; or multiple antibiotics simultaneously for longer durations.
For example: A patient went untreated for 2 years, then received doxycycline for 2 weeks – followed by a second 4-week cycle of doxycycline administered 2 months later for a curative effect. (R)
The aforementioned example is a person who had legitimate “chronic Lyme” infection over an extended duration.
Once treated with a “pulsed” administration of antibiotics (2-week cycle, break, then a 4-week cycle) – the infection was eradicated.
Borrelia bacteria persists in the body?
There are many individuals who think that the Borrelia bacteria responsible for causing Lyme disease are never fully eliminated from the body – or that extensive antibiotic treatment is required (beyond what is conventionally recommended by most medical doctors) to achieve cure.
Why do they think this? According to the National Institute of Allergy & Infectious Diseases (NIAID): B. burgdorferi and remnants can persist in animals after antibiotic therapy, including mice and nonhuman primates. (R)
While this sounds concerning, researchers have NOT been able to culture Borrelia bacteria in nonhuman primates after antibiotic therapy – and there was no evidence to suggest that they were still infectious.
Essentially, there seems to be “persisting DNA” from Borrelia bacteria that lingers in the body after infection.
However, this isn’t currently regarded as being problematic because there’s no evidence that it’s still infectious or damaging.
So in a sense, persons who suggest Borrelia bacteria material can “persist” in the body after treatment are 100% correct.
However, whether this material is responsible for “chronic Lyme” symptoms is currently unknown and requires additional investigation.
More antibiotics doesn’t help – may worsen outcomes…
A subset of self-proclaimed “Lyme literate” professionals (MDs, chiros, naturopaths, etc.) believe that the Borrelia infection is still active (via Lyme spirochete “persisters”).
Yet, randomized controlled trials (RCTs) demonstrate that longer-term antibiotic therapy does NOT improve symptoms for those with lingering symptoms dubbed “chronic Lyme.
Furthermore, some data suggest that longer-than-usual antibiotic therapy for Lyme disease may actually be harmful – generating more iatrogenic complications (i.e. lasting deleterious effects resulting solely from excessive antibiotic use.)
The fact that more antibiotics tends to produce zero additional therapeutic benefit (on average) in the treatment of “chronic Lyme” symptoms, and often worsens symptoms, suggests a couple potential possibilities:
Not all cases of Lyme can be fully cured
- Perhaps not all cases of Lyme can be 100% cured. Perhaps infections become too severe to fully eradicate with currently recommended antibiotics.
- Most medical doctors do NOT believe this because there’s no strong evidence to support this idea – this is reasonable.
Lyme was already cured
- Most medical doctors believe that conventional antibiotic regimens fully cure Lyme disease by killing infectious Borrelia bacteria.
- Excessive antibiotic treatment simply yields iatrogenic complications resulting from chronic antibiotic administration (e.g. toxicities, gut bacteria depletion, etc.).
Note: This is NOT to suggest that additional antibiotics never help. They will help if a person received suboptimal initial treatment for Lyme disease such that prototypical Lyme disease symptoms never improved or cleared up.
What “chronic Lyme” usually is… (Post-Lyme Disease Treatment Syndrome)
Individuals who were: (A) infected with Lyme disease (confirmed by a medical doctor) AND (B) treated for Lyme disease – may exhibit protracted or “chronic” symptoms even if the infection was fully eradicated with antibiotics.
These symptoms may have emerged: (A) prior to treatment (during infection) and/or (B) during treatment (due to interactions between the infection, antibiotics, and one’s immune system).
When these symptoms “linger” long after treatment is complete – they are often regarded as “chronic Lyme.” The more apt name for “chronic Lyme” is “post-treatment Lyme disease syndrome” (PTLDS).
Chronic Lyme symptoms will be from one (or more) of the following:
1. Emerged during infection (pre-treatment)
Symptoms emerge during infection (likely as a result of bacteria inflicting damage and/or the immune system responding to bacteria and inflicting damage to the body).
2. Emerged during treatment
Symptoms emerge during treatment of Lyme disease due to a combination of: (A) antibiotics, bacteria, immune system interactions (e.g. Herxheimer-type reactions); (B) antibiotics altering physiological systems (e.g. gut bacteria, brain activity, immune system, etc.); (C) immune system responding to endotoxins and antibiotics.
3. Emerged after treatment
Symptoms may emerge after treatment as a result of physiology (e.g. brain, gut, immune system) recalibrating itself back to homeostasis (e.g. pre-Lyme, pre-antibiotics).
This recalibration can take time for some people and may explain symptoms that emerge within days or weeks after treatment.
Occasionally some may refer specifically to “Neuroborreliosis” (neurological manifestations of Lyme disease) as “chronic Lyme.” Symptoms specific to neuroborreliosis include (but are not limited to):
- Cranial nerve abnormalities
- Altered mental status
- Sleep disturbance
- Increased intracranial pressure (papilledema)
Within 1-year post-treatment, approximately 90% of patients that develop early Lyme neuroborreliosis will be free of symptoms. (R)
However, Late Lyme neuroborreliosis can be stabilized within ~1-year post-treatment, but 60-80% of patients exhibit residual neurological symptoms.
Note: This does NOT include individuals who receive suboptimal treatment for Lyme. Obviously if you aren’t properly treated for Lyme disease and still have an actual “infection” – this would explain your Lyme symptoms (medical doctors should know how to rule this out).
Important distinction: Untreated infection vs. “chronic Lyme” symptoms vs. Post-Lyme Disease Treatment Syndrome (PLDTS)
It is important to distinguish between actual chronic Lyme disease (due to an untreated infection) and what most laypersons refer to as “chronic Lyme” (which usually fits the diagnosis of “Post-Lyme Disease Treatment Syndrome”).
It is important to note that a person could: (1) have chronic Lyme disease due to an untreated infection; (2) end up getting properly treated; and (3) experience “Post-Lyme Disease Treatment Syndrome” (PLDTS) associated with lasting effects of the infection and/or iatrogenic effects from antibiotics.
Chronic Lyme disease (untreated infection)
A legitimate, longstanding, untreated Borrelia infection and “Lyme disease.”
This would likely be a disseminated infection (think Stage 2 or Stage 3 of Lyme disease).
If you did NOT seek treatment for Lyme disease or received suboptimal treatment – you may have actual “chronic Lyme” disease.
Chronic Lyme (proper treatment)
“Chronic Lyme” is often used describe symptoms of Lyme disease that linger after proper antibiotic treatment.
(Some of these symptoms may be due to physiologic damage inflicted by Borrelia bacteria prior to treatment.)
Many who claim to have “chronic Lyme” are convinced the infection is still “active” in the body (despite zero evidence).
Many self-proclaimed “chronic Lyme” sufferers actually have Post-Lyme Disease Treatment Syndrome/Symptoms.
Post-Lyme Disease Treatment Syndrome
A variety of symptoms or unwanted effects that linger after Lyme disease treatment.
Unwanted symptoms or adverse effects that linger post-treatment are usually due to physiologic alterations or damage stemming from bacteria, antibiotics, one’s immune system – or an interaction between these systems.
Persistent Lyme Disease: True Chronic Lyme Disease rather than Post-Treatment Lyme Disease Syndrome (R)
Lacout et al. (2018) presented a case showcasing the importance of NOT automatically assuming “Post-Lyme Disease Treatment Syndrome” in patients that have undergone treatment for Lyme disease and still exhibit symptoms.
- Patient: 40-year-old male, hunting guard, regularly suffered “multiple tick bites”
- Presentation: Lack of energy; diffuse pains (cramps, stiffness, neuropathic “burning” pain); tremor; fluctuating migrating arthralgia (evolved over ~3-month duration)
- Diagnosis: Lyme disease. Serology was positive via Western blot.
- Additional testing: A second Lyme serology performed a few months later was negative but showed IgM antibodies below the threshold of positivity.
How was this patient treated?
- Ceftriaxone (2g per day for 21 days): This significantly improved his overall health. However, the patient continued experiencing bouts of moderate asthenia (weakness & fatigue) and episodes of arthralgia (joint stiffness).
- Ceftriaxone (2g per day for 15 days) + Doxycycline (100 mg, b.i.d. for 1 month): The patient’s symptoms disappeared almost completely, but gradually reappeared.
- Ceftriaxone (2g per day for 1 month) then Doxycycline (200 mg, b.i.d.) + Hydroxychloroquine (200 mg, once daily): Two months later after rapid improvement, the patient exhibited zero symptoms Five months later while the treatment was continued – the patient was asymptomatic.
Note: I assume the final protocol was a triple therapy combination: Ceftriaxone + Doxycycline + Hydroxychloroquine. However, in the report it was written “Ceftriaxone then Doxycycline associated with Hydroxychloroquine.”
Authors stated the following:
- The clinical improvements and setbacks corresponding strictly to the administration and interruption of antibiotics, and the final remission are in favor of a chronic persistence of Borrelia.
- The persistence of Borrelia infection, despite proper antibiotic treatment, has been well described in literature. This seems attributable to the cystic shapes of Borrelia resisting antibiotics and the creation of extracellular matrix type biofilms that protect the bacteria.
- Bacteria that grow as biofilms are protected from killing by antibiotics.
According to these researchers, true “chronic Lyme” may present as the following:
- Interferon-gamma response NOT followed by an increase in IL-4: This suggests both a persistent Th1 response and a deficient Th2 response.
Researchers also believe that Borreliosis may induce immunosuppression with lack of humoral response and long-term immunity – and false-negative serological results may be due to a deficiency in antibody production.
It was stated that, “antibiotic testing is necessary to reach Lyme disease final diagnosis, namely in patients presenting with negative tests and a suggestive clinical presentation.”
What are my thoughts here? There are some notable limitations.
Foremost: This was a single case study that may not be applicable to other cases.
Additionally, it is theoretically possible that this patient was infected by multiple bacteria from his tick bite and/or infected again after his initial treatment due to his high risk occupation.
We must also consider that the patient might have fully recovered over time (months) after his initial treatment with ceftriaxone (2 grams per day for 21 days).
In other words, he may have achieved the same outcome with zero additional antibiotics (despite a correlation of improvement on additional courses).
Also possible is that the antibiotics somehow helped him manage and/or recover from Post-Lyme Disease Treatment Syndrome type symptoms via immunomodulation, anti-inflammatory actions, and/or brain & CNS modulation.
In other words, the additional medications may not have been treating “persisting” Borrelia bacteria – but may have generated therapeutically beneficial effects.
Moreover, it may be worth considering a possible “placebo response” in this case.
Nonetheless, it is possible that “persisting” Borrelia required additional rounds of antimicrobial therapy and unique combinations (possibly to penetrate biofilm matrices and achieve a potent bactericidal effect.)
This is an intriguing case given the fact that the patient seemed to improve on antibiotics and “stayed improved” after his final course – which could indicate that long-term treatment was required to fully eliminate Borrelia and treat a legitimate “chronic Lyme” disease.
Lyme Disease Testing: Positive vs. Negative (R)
Lyme disease tests are engineered to detect antibodies mounted by the body in response to Borrelia infection.
- The accuracy of Lyme disease testing depends upon how long you’ve been infected and degree of antibody formation.
- Antibodies can take several weeks to develop – so infected persons may test negative if recently infected.
- 4-6 weeks into a Borrelia infection, FDA-approved Lyme disease tests are usually accurate.
- During the initial few weeks of infection (e.g. when the “bull’s eye” rash shows up) – the test results are likely to be negative (even if you’re infected).
- If you receive antibiotics early after infection, you may not have mounted a significant antibody response such as to “test positive” for Lyme (even if you’re infected).
- Just because you’ve “tested negative” does NOT mean that you don’t have Borrelia infection or that you should stop a prescribed treatment.
Why am I testing positive for Lyme disease after treatment?
Antibodies can persist in the blood for months (sometimes years) after the Borrelia infection is gone, therefore, the test cannot be used to determine whether someone is “cured.”
Other infections (including tick-borne infections, viruses, bacteria) and various autoimmune conditions can also cause “false positive” test results.
Certain test results show IgM and/or IgG antibodies. According to the CDC, positive IgM results should be ignored if the patient has been ill for longer than 30 days.
Testing positive for Lyme antibodies after treatment does NOT mean that a person still has Lyme disease.
Many people erroneously assume that a “positive test” for B. burgdorferi indicates that Lyme is still “active” (i.e. surviving/proliferating) which is NOT usually the case if they’ve received proper antibiotic therapy.
Lyme Infection Symptoms vs. Chronic Lyme Symptoms (Post-Lyme Disease Treatment Syndrome)
There can be “overlap” in symptoms of “Borrelia infection” and “chronic Lyme” (Post-Lyme Disease Treatment Syndrome).
Why? Some of the symptoms resulting from Borrelia infection may inflict irreversible damage to aspects of physiology (such that dysfunction remains after the infection is treated).
Borrelia infection (Lyme disease) symptoms (R)
Stage 1: Localized Lyme disease. Bacteria have not yet spread (disseminated) throughout the body. Common symptoms: Fever, Chills, Headache, Joint Pain, Muscle Pain, Stiff Neck, Erythema migrans (bull’s eye rash).
Stage 2: Early disseminated disease (bacteria have begun to spread). Common symptoms: Nerve pain or numbness, paralysis or weakness in facial muscles, heart problems (e.g. palpitations, chest pain, shortness of breath).
Stage 3: Late disseminated disease (bacteria have spread throughout the body). Common symptoms: Abnormal muscle movement, Joint swelling, Muscle weakness, Numbness & tingling, Speech problems, Cognitive impairment (e.g. memory loss, difficulty concentrating, etc.), Vision problems, Sleep disorders.
In other words, you may properly treat the Borrelia infection with antibiotics such that it’s fully eradicated, however, you may experience lingering or “chronic” effects from physiological damage inflicted during the time when the infection was untreated.
Post-Lyme Disease Treatment Syndrome (PLTDS) symptoms (R)
In order for something to be considered true “PLTDS” – symptoms must present for at least 6 months following the completion of conventional antibiotic therapy for Lyme disease. The most common symptoms include:
- Pain (musculoskeletal)
- Neurocognitive deficits
Why do symptoms need to present for 6 months post-antibiotics to be considered PLDTS?
Probably because medical professionals know that it may take the body/physiology a significant length of time to recover after Borrelia infection AND extensive antibiotic therapy.
For this reason, professionals want to see if patients improve organically after treatment before assuming they have some long-term “syndrome.”
Remember, advanced stages of Lyme altered the body in significant ways – and healing may require up to 6 months (sometimes longer).
Many unwanted symptoms that linger after treatment will fade or completely go away with enough time (assuming treatment was sufficient).
However, in a minority of individuals, symptoms will persist for 6+ months after treatment with little to zero improvement.
In these cases, a combination of targeted pharmacological and non-pharmacological approaches to manage specific symptoms in PLDTS is recommended.
Common “Chronic Lyme” symptoms (PLDTS)
Research by Rebman & Aucott (2020) documented symptoms that were significantly associated with “chronic Lyme” or Post-Lyme Disease Treatment Syndrome (PLDTS) based on a 36-item short-form health survey. (R)
Of all the symptoms reported, the most likely symptoms to be classified by patients as “severe” included: fatigue (first) and sleep disturbances (second) – followed by (in no specific order) joint pain, cognitive deficits, muscle pain, and headache.
Symptoms are listed below in order of prevalence (most prevalent to least prevalent).
Very common (75-100%)
- Joint pain
- Focus & concentration deficits
- Muscle pain
- Memory impairment
- Trouble thinking of words
- Sleep disturbances
- Neck pain
- Paresthesia (hands & feet)
- Low back pain
- Visual impairment
- Coordination deficits
Fairly common (under 50%)
- Muscle twitch (i.e. fasciculation)
- Paresthesia (face & scalp)
- Breathing difficulty
- Urination changes
What percentage of Lyme disease patients experience “chronic Lyme”?
Likely between 10-35% of patients.
Back in the 1980s when treatment protocols were less established – more patients experienced persistent “chronic Lyme” type symptoms.
Rebman & Aucott (2020): (R)
In the mid-1980s, up to 50% of Lyme disease patients experienced PLTDS: fatigue, musculoskeletal pain, memory impairment, and headache – several years after treatment.
A population-based study on Nantucket Island found that ~36% of Lyme disease patients (in the late 1980s) had ongoing symptoms 6+ years later – and often reported fatigue, headache, cognitive deficits, sleep problems, musculoskeletal pain, numbness, and/or weakness.
From the late 1990s to mid-2010s, studies have found that 0% to 35% of Lyme disease patients experience persistent, non-specific, “minor” symptoms that do NOT go away after Lyme disease treatment.
Causes of “chronic Lyme” (Routes of Damage Induction)
Included below are the potential causes of “chronic Lyme” or “Lyme disease syndrome” (LDS).
Understand that the causes may differ between sufferers of chronic Lyme such that: one person might have sustained significant direct damage from Borrelia bacteria – yet another may have sustained significant damage from an interaction effect (e.g. Herxheimer-type reaction) between infection and antibiotic treatment.
It is important to clarify that symptoms of chronic Lyme are not always result of physiological “damage.”
In some cases, there merely a result of physiological “change” in response to the bacteria, antibiotic treatment, or immune activation.
1. Bacteria-induced damage or change (Borrelia spp.)
- Physiological damage: Borrelia burgdorferi can inflict damage to one’s physiology over an extended duration. It may directly attack tissues (including the heart, brain, and nerves) – and its damage might be exacerbated by immune responses to the bacteria (e.g. cytokine & chemokine secretion).
- CNS sensitization: This is a phenomenon of synaptic plasticity and increased neuronal responsiveness in central pain pathways after insults (such as from Borrelia infection). The effects? Hyperalgesia (high sensitivity to pain) and allodynia (sensitivity to touch). (Likely mediated by glial cells e.g. microglia and astrocytes in the brain and spinal cord).
Note: The specific type and magnitude of damage resulting from Borrelia infection may be contingent upon duration and severity of infection – as well as specific site of infection and exact immune reaction to the infection.
2. Immune-related damage or change
- Inflammatory response: The immune system may exhibit significant differences in activation from pre-infected state vs. infected state. The immune system may respond to untreated Borrelia infection with high levels of inflammatory cytokines & chemokines (which could inflict damage and/or potentiate Borrelia-mediated damage).
- Atypical immune function: The presence of Borrelia bacteria may induce atypical immune activation. This atypical immune activation may linger (to some extent) after treatment is complete and explain “chronic” symptoms.
3. Antibiotic-related damage or change
- Gut bacteria depletion: Depletion of “probiotic” or healthy gut bacteria may explain why individuals experience adverse effects that linger for months after Lyme disease treatment. Gut bacteria will eventually normalize after treatment, but this may take months.
- Toxicities: Antibiotics can be directly toxic in some cases. Most conventional antibiotics used to treat Lyme disease are of relatively low toxicities. That said, reactions can vary by user. In most cases, toxicities are more likely to be caused by interactions between an antibiotic and Borrelia infection – rather than solely caused by the antibiotic.
- Brain & CNS modulation: Unknown to many is the fact that antibiotics can significantly alter brain and CNS function. Some of the effects of antibiotics on the brain and CNS persist long after treatment is complete. (Hence the reason certain people claim to feel subjectively “different” or “not like themselves” after treatment).
- Immunomodulation: Antibiotics exert an immunomodulatory effect during treatment. This effect may persist after treatment for an unknown duration (and may actually be beneficial).
- Yeast increase (?): When antibiotics kill bacteria, this can allow yeast (usually “Candida”) to propagate. In most immunocompetent people, this will be a localized effect (e.g. oral candida). That said, some believe this candida overgrowth could be to blame for some symptoms.
- Hormone modulation: Some antibiotics can affect hormone concentrations. Alterations in hormone levels may explain why you “feel different” during treatment – and possibly for a while after. That said, hormones should normalize after treatment.
Note: It should be relatively easy to know whether you experienced antibiotic-related damage. If your symptoms emerged “during” antibiotic treatment – then the effect of the antibiotic (or its interaction with Borrelia and immune function) is to blame.
4. Bacteria, antibiotic, immune interactions
Jarisch-Herxheimer reaction: There’s evidence that a Herxheimer reaction can occur during the treatment of Lyme disease wherein harmful bacteria secrete endotoxins (while getting killed by antibiotics) that damage the body directly and possibly indirectly via immune reactions.
Endotoxins: Antibiotics destroy cell membranes of B. burgdorferi, and in the process, bacterial toxins are released into the bloodstream.
- Direct physiologic damage: Endotoxins and endotoxin-like compounds may cause direct damage to various areas of the body.
- Immune-mediated damage: The immune system may react strongly to endotoxins in the blood stream and generate an exaggerated inflammatory response (TNF-alpha, interleukin-6, interleukin-8) – which could damage organs.
What are common signs of a Herxheimer reaction?
Fever, chills, rigor, hypotension, headache, tachycardia, hyperventilation, vasodilation with flushing, myalgia (muscle pain), anxiety, and exacerbation of skin lesions – within 1-3 hours after the first dose of antibiotics.
The intensity of the reaction indicates the severity of inflammation. Some medical doctors will treat this reaction with anti-inflammatory agents (aspirin, ibuprofen, etc.), prednisone, and/or anti-TNF agents.
A subset of individuals who developed “symptoms” during treatment of Lyme disease – that persisted long after treatment – might be dealing with sustained physiologic damage following the Herxheimer reaction.
5. Neuropsychiatric manifestations (e.g. anxiety & stress)
Lyme disease may cause neuropsychiatric symptoms (such as via cytokine and/or chemokine release by the immune system in response to infection) and a person may experience heightened anxiety or stress (even before diagnosis).
The diagnosis of Lyme may significantly increase preexisting anxiety/stress.
Why? A person may worry that: (1) Lyme disease inflicted permanent physiological damage and/or (2) treatment with antibiotics may be difficult to tolerate or toxic.
Moreover, antibiotics can cause neuropsychiatric reactions in a small percentage of individuals (particularly doxycycline).
A person may also be “anxious” about symptoms that emerge during treatment or that don’t go away after antibiotics. Why? The person may be convinced that they are “still infected with Lyme.”
This causes the person to stress even more and may generate somatic or psychogenic type reactions (e.g. symptoms that emerge solely as a result of stress).
The person may then become convinced that these new symptoms are due to “chronic Lyme” – when in reality they’re due to unmanaged stress.
Note: This is not to suggest that every “chronic Lyme” sufferer has somatic symptoms – many probably do NOT. However, a subset of patients likely has a combination of protracted symptoms from Lyme AND symptoms from stress associated with Lyme and Lyme treatment.
What about actual “chronic Lyme” infection?
Chronic Lyme infection would suggest that someone is infected with Lyme for a long-term (i.e. chronically) and either: (A) never treated OR (B) suboptimally treated (such that Borrelia bacteria are still living within the body).
Because most medical doctors (MDs) know how to properly treat Lyme disease in the United States – the odds of being “suboptimally treated” are extremely low.
If you were never treated by an actual medical doctor (MD) such that you ignored the infection (thinking your body would fight it off on its own) OR tried “natural treatments” (which don’t work for Borrelia spp.) – then you NEED treatment if you hope to recover.
Generally, as long as you eventually get the proper treatment you need (e.g. antibiotics) – you should be able to recover from Borrelia infection (but some physiological damage induced by the infection may be permanent). (R)
Do all people with Lyme disease develop “chronic Lyme”?
No. In fact, most people who quickly recognize their symptoms and seek prompt treatment will kill the Borrelia bacteria with antibiotics before it inflicts significant physiological damage.
Though these individuals may still experience some treatment-related side effects and possibly some subtle “symptoms” after treatment – most will report feeling “back to normal” within days to weeks after the antibiotic protocol is complete.
Variables that increase risk of developing “chronic Lyme”
Included below are variables I suspect increase one’s risk of developing “chronic Lyme.”
Long-term infection prior to treatment
Being infected with Lyme disease for an extended duration before getting properly treated can increase risk of developing “chronic Lyme” symptoms.
- Permanent physiologic damage: Long-term infection increases risk of enduring permanent physiological damage and/or function changes.
- Magnitude of physiologic damage/change: Long-term infection generally increases the magnitude of physiologic damage resulting from infection.
- Total number of physiologic changes: Long-term infection may increase the total number of physiologic abnormalities resulting from Lyme disease.
- Reversible effects require more healing time: Long-term infection may inflict more significant “reversible” physiologic damage such that the amount of time required for healing/recovery is increased after treatment (hence lingering symptoms post-treatment).
The reason long-term infection is associated with greater likelihood of “chronic Lyme” symptoms has to do with the fact that severity of infection generally worsens over time (e.g. dissemination of bacteria throughout the body & damage to numerous physiologic systems).
Additionally, the ongoing immune-mediated release of cytokines and chemokines in response to an untreated, severe, disseminated infection – can induce and/or exacerbate bacteria-induced physiologic damage (via excessive inflammation.)
Misdiagnosis and delayed diagnosis were recurring themes in a sample consisting predominantly of patients with “chronic Lyme disease” (61%) who reported having remained ill for 6+ months after antibiotic treatment. (R)
More than half of these individuals (51%) reported it took them over 3 years to be diagnosed and over half (54%) saw more than 5 medical doctors (MDs) before proper diagnosis!
Severe infection prior to treatment
The more severe one’s Borrelia infection prior to treatment, the more likely a person will experience Post-Lyme Disease Treatment Syndrome (PLDTS) or “chronic Lyme.”
Severity of infection generally goes “hand-in-hand” with duration of infection prior to treatment such that an untreated long-term infection is usually of greater severity than short-term infection.
- Stage 1: Localized infection.
- Stage 2: Infection begins disseminating.
- Stage 3: Infection has disseminated throughout the body.
There are 3 primary stages of Lyme. The lower your stage at time of diagnosis, the less likely you’ll end up with “chronic Lyme” symptoms.
Even persons treated in “Stage 1” can develop chronic Lyme, however, the likelihood that symptoms will be severe and/or long-lasting is lower than persons treated in “Stage 2” and “Stage 3.”
How else do you know if you have a “severe infection?”
- Severity of symptoms: Symptoms are pronounced and difficult to manage in “severe” infection.
- Total number of symptoms: The total number of symptoms that experienced is often “greater” in severe infection than mild infection.
Interaction between antibiotics, bacteria (e.g. Borrelia), immune system
The interaction between: (A) antibiotics; (B) bacteria (e.g. Borrelia, et al.); and (C) immune response – is often highly individualized, but can significantly impact likelihood of experiencing “chronic Lyme” (i.e. PLDTS).
Most likely mechanisms of “chronic Lyme” from interactions:
Antibiotics & bacteria: The most common “reaction” here is a Herxheimer-like reaction wherein bacteria secrete endotoxins which can directly damage the body (especially if secreted in high concentrations).
Antibiotics & bacteria & immune response: There’s significant interplay between antibiotics, Borrelia bacteria, and one’s immune response during treatment. This interplay could give rise to protracted “symptoms” post-treatment.
Antibiotics begin killing Borrelia bacteria > bacteria secrete endotoxins > immune system senses endotoxins and generates inflammatory response (which inflicts or exacerbates damage) – think Herxheimer-type reaction.
It’s also possible that there could be unique interactions between “antibiotics & immune response” and/or “bacteria & immune response” – during treatment – but these are far less likely and don’t make as much logical sense.
I suspect that: (A) specific Borrelia species and/or subspecies; (B) co-infections; and (C) bodily site(s) of infection – may impact the severity of Lyme infection and ultimately the likelihood of developing “chronic Lyme” symptoms.
- Borrelia species, subspecies, genotypes
- Co-infections (?) + (specific genotypes)
- Babesia: Parasite that causes disease similar to malaria.
- Bartonella: Bacteria that causes “Cat Scratch Disease.”
- Ehrlichia: Bacteria that causes “Ehrlichiosis.”
- Rickettsia rickettsii: Bacteria that causes “Rocky Mountain Spotted Fever.”
- Anaplasma: Bacteria that causes “Anaplasmosis” (a more severe condition than Lyme).
- Site(s) of infection: The specific sites or locations around the body that are most “infected” with the Borrelia bacteria may determine the specific type of damage inflicted by this infection.
Additionally, there are certain types of ticks (e.g. Ixodes) that can transmit multiple types of Borrelia bacteria simultaneously to a host.
This means that you could (theoretically) end up infected with multiple (i.e. 2+) Borrelia infections simultaneously.
In addition to Borrelia bacteria, you could end up infected with other types of bacteria.
Don’t believe me? Check this out: “One Man, Three Tick-Borne Illnesses.” (R)
- A 70-year-old man presented to the ER with fever, ankle swelling, and nausea after an “insect bite” ~1-month prior.
- Before treatment, he had anemia, thrombocytopenia, and acute kidney injury.
- Doctors suspected tick-borne illness and serologies revealed: Borrelia burgdorferi, Anaplasma phagocytophilum, and Babesia microti. (This required treatment with: Doxycycline, Atovaquone, and Azithromycin.)
Authors state that one “co-infection” with Lyme disease (i.e. Borrelia) is common – but more than 2 infections is pretty rare.
It is imperative that medical doctors rule out “co-infection” with Lyme disease – as some of the co-infections can produce more substantial symptoms and inflict greater physiologic damage than Lyme.
Multiple infections simultaneously may be synergistic in inflicting physiologic damage.
Moreover, it’s important to consider that the non-Lyme “co-infection” was more responsible for your “protracted symptoms” than the Lyme.
We must also consider that the site where the tick enters the body and spreads bacteria might determine (to some extent) the effects that are endured.
Also, whichever locations of the body end up with the highest concentration of bacteria (prior to treatment) may be the most damaged.
(That said, certain regions may be more “sensitive” to bacteria than others – and thus more damage could occur despite lower bacterial loads.)
Antibiotic specifics (specific antibiotic; dosage; duration) & iatrogenic effects
In some people who have “chronic Lyme” – the symptoms they’re experiencing may have little or nothing to do with the actual Lyme infection (i.e. Borrelia).
Although interaction effects between the antibiotic and Lyme (i.e. Borrelia) infection can often cause protracted adverse effects – the antibiotic may be solely or mostly culpable for adverse effects that linger post-treatment.
These effects are known as “iatrogenic” effects – relating to illness caused by treatment. Iatrogenic complications are likely influenced by the following:
- Specific antibiotic: The specific antibiotic used in treatment may influence risk of experiencing protracted, post-treatment effects. Why? Antibiotics have different mechanisms of action within the body – and may kill different strains of bacteria (with the exception of Borrelia).
- Benzathine penicillin
- Macrolides (azithromycin & clarithromycin)
- Dosage: The dosage of the antibiotic administered may influence the effectiveness of your Lyme disease treatment. In general, high doses tend to exert a stronger antimicrobial effect within the body – but also increase risk of side effects. High dosages can also increase risk of a Herxheimer-type reaction (and warrant monitoring early in treatment).
- Duration of treatment: The length of time over which you administered an antibiotic may impact the number and severities of protracted effects resulting from antibiotic treatment.
- Treatment-emergent reactions: Though most people experience significant improvement in symptoms during antibiotic treatment, all individuals will experience some treatment-related reactions. Examples include (but are not limited to):
- Antibiotic side effects: Might include things like changes in bowel habits, GI distress, headache, tinnitus, mood changes, energy level changes, etc. Some of these may linger well after treatment is complete.
- Gut bacteria depletion: It is known that antibiotics wreak havoc on gut bacteria. They kill both infectious (pathogenic) bacteria and beneficial (probiotic) bacteria in the body. The death of probiotic bacteria is significant given that these bacteria may require significant time to repopulate – or may never fully repopulate.
- Immunomodulation: Most antibiotics modulate immune function (in addition to direct bactericidal actions). It’s reasonable to suspect that there could be some sustained alterations in immune function post-antibiotics (such as via an entrainment effect).
- Brain & CNS alterations: The depletion of gut bacteria and modulation of immune function could also cause activation changes within the brain and central nervous system.
Reactions to antibiotics can be permanent (such as in the event of “toxicity”).
However, most reactions are fully reversible such that the person returns to what they’d consider to be “normal” – within weeks or months after treatment.
Consider the elimination “half-life” of your antibiotic…
The pharmacokinetic elimination “half-lives” of antibiotics used to treat Lyme disease can differ significantly.
- For example, the half-life of doxycycline ranges from 16-22 hours – whereas the half-life of amoxicillin is about 1 hour.
- This means that doxycycline will still be in your system for ~4.6 days after treatment ends – whereas amoxicillin will be eliminated faster.
Some of the symptoms you may be experiencing in the first week or so after stopping an antibiotic (particularly doxycycline) may be due to the fact that the antibiotic is still in your system exerting an effect.
Even after the antibiotic is fully eliminated, it can take: days, weeks, or months (particularly with regard to repopulating healthy gut bacteria) to revert fully back to pre-antibiotic homeostasis.
The transition back to pre-antibiotic homeostasis could cause some disconcerting symptoms that you may have erroneously thought were protracted effects from Borrelia infection (something to consider).
- Age & sex: Some evidence suggests that being older age and female may be associated with worse outcomes in Lyme disease.
- Body composition & fitness: Body weight, fat percentage, lean mass, and general fitness may influence outcomes in Lyme disease.
- Diet & nutrition: Overeating or undereating significantly may impair immune function and regulation of inflammation. Vitamin/nutrient deficits (more likely) or significant specific vitamin/nutrient surpluses (less likely) may interact with the infection and/or immune system to worsen outcomes.
- Genetics & epigenetics: There may be certain genetic components that influence Lyme outcomes (to some extent) – likely as a result of influencing immune responses to the infection.
- Gut health & bacterial composition: The health of your GI tract and its bacteria may determine how you react to antibiotic treatment and influence likelihood of treatment-related complications.
- Lifestyle: High-stress, poor sleep, inactivity (e.g. lack of exercise), being overweight/obese, drinking alcohol, smoking, etc. – all likely increase risk of complications from Lyme disease.
- Medical conditions: Any medical conditions that you have may increase risk of protracted complications associated with Lyme disease (this includes “mental health” conditions – as these influence immune function).
- Substance usage (e.g. alcohol, caffeine, OTC medications, prescriptions, illicit substances, dietary supplements, etc.): Certain substances interact with both your immune system’s reaction to Lyme disease – and the infection itself to worsen outcomes.
Note: The above assume that Lyme was treated with a proper antibiotic regimen. If the antibiotic regimen was suboptimal – then obviously this needs to be addressed.
Other variables that should be considered…
Somatization & functional disorders
A subset of individuals may experience something akin to a somatic reaction after Lyme disease.
This is due to the sheer stress of having Lyme disease (perhaps for an extended duration) and then undergoing treatment for an extended duration with potent antibiotics (which may exacerbate stress).
Symptoms may result specifically from a “stress response” – and anxiety may exacerbate other legitimate “chronic Lyme” symptoms.
Others may experience functional disorders (e.g. functional neurological disorders) as a result of CNS/brain wiring changes in response to stress and/or the infection.
Note: Functional disorders are distinct from somatic disorders in that symptoms don’t necessarily improve via stress reduction.
As I’ve mentioned, if the Lyme disease wasn’t properly treated – the “chronic Lyme” is due to a suboptimally treated infection.
Odds of this are very low if you were diagnosed and treated by an actual medical doctor (MD) and followed the treatment recommendations perfectly.
- Alternative treatments: If you tried some alternative antibiotic (think “naturopath” or “chiropractor” or “herbalist”) – you’re probably still infected with Borrelia bacteria.
- Poor compliance: If you were prescribed medication but did NOT adhere to the prescribed treatment protocol (e.g. you skipped a few days of antibiotics “here and there”) – you may still be infected with Lyme.
- Treatment protocol: In rare cases, a medical doctor may fail to prescribe the correct: antibiotic, antibiotic dosage, and/or antibiotic administration schedule (frequency and duration).
- Treatment errors: For example, if you took doxycycline every day with “calcium” or “magnesium” supplements (both of which interfere with its absorption) – this could’ve decreased its effect such that you failed to properly eradicate the Borrelia infection.
The reason I suspect “suboptimal” treatment can increase risk of chronic Lyme has to do with data.
In the 1980s, treatment protocols weren’t as established as present day – and rates of “chronic” symptoms after treatment were significantly higher (up to 50% of patients in some reports).
Risk factors for “chronic Lyme” symptoms (i.e. Post-Treatment Lyme Disease Syndrome)
This is according to Rebman & Aucott (2020).
- More severe disease at onset: Characterized by a higher number of symptoms.
- Signs suggestive of disseminated disease (e.g. Bell’s Palsy, headache, photophobia, neck pain)
- Comorbid medical conditions
- Delays in diagnosis (or misdiagnosis) and/or treatment
- Corticosteroid exposure (during acute infection): This is prescribed often help with symptoms like Bell’s palsy – but is associated with worse long-term facial function outcomes.
- Poor or “muted” initial immune response: An inadequate initial immune response to acute stages of Borrelia infection is characterized by lower levels of circulating plasmablasts – is associated with persistent symptoms after treatment.
- Elevated immune mediators (IL-23 & CCL19): High concentrations of various immune mediators at disease onset and/or in immediate convalescent phases may be associated with the presence of lingering symptoms up to ~1 year after treatment.
- Initial antibody response (?): The data are mixed here with some studies suggesting that negative serology is associated with clinical outcomes – and other studies suggesting no association.
- Specific Borrelia species & subspecies (?): There are over 50+ distinct genotypes of B. burgdorferi in North America and Europe. It’s reasonable to suspect that certain subtypes may inflict more significant physiologic damage and/or disseminate than others. RST1 strains are more inflammatory and associated with more severe symptoms and antibiotic-resistant arthritis.
- Multiple infections (?): Certain ticks like Ixodes can simultaneously harbor and transmit multiple genotypes of B. burgdorferi and other pathogens. Essentially, you could get infected with multiple types of “B. burgdorferi” at the same time from one tick – and you could end up with other bacterial infections (e.g. Babesia microti) as well. All of this could worsen treatment outcomes.
- Adults: When diagnosed and treated promptly, adults appear MORE LIKELY than children to report persistent symptoms following Lyme disease treatment. The data are mixed as to whether specific sex (e.g. male vs. female) and age ranges (e.g. older vs. younger) for adults – affect outcomes. One study found that “older” and “female” adults were more likely to experience chronic symptoms.
Physiological Model of Chronic Lyme (Researchers)
Rebman & Aucott (2020) believe that “chronic Lyme” or persistent symptoms of Lyme disease are explained by interactions between the variables listed below. (R)
- Host genetic & immunologic factors: Toll-like receptors 1 & 2; gut microbiome; environmental exposures; co-morbid health conditions.
- Illness experience factors: Treatment delays, psychosocial stress, suboptimal treatment.
- Microbiologic factors: Strains of Borrelia, co-infections.
- Immune system inflammation & dysregulation: Autoimmunity can occur late in Lyme disease – resulting in arthritis (via Th17-mediated responses). This can persist even after the Lyme bacteria are eliminated (evidenced by CRP, CCL19, and IL-23 levels).
- Persistent Borrelia antigens or infection: In-vitro and animal models indicate the presence of persister organisms and/or retained spirochetal proteins.
- Neural network alterations: Central sensitization (post-infectious syndrome).
Persister organisms & antigens…
Research “in vitro” shows that B. burgdorferi, like many bacteria, can form what are known as “persister organisms” as a result of: (A) antibiotic pressure OR (B) stationary phase growth. (R)
The persister organisms are thought to be antibiotic-tolerant and less likely to be killed with standard antibiotics. (R)
Therefore, some researchers believe that conventional antibiotic therapy may result in “partial treatment” or generation of persister organisms that may be involved in the ongoing pathophysiology of “chronic Lyme” (i.e. PLDTS).
Non-human primates, mice, and dogs all exhibit B. burgdorferi persistence via tissue histopathology and PCR in antibiotic treated animals.
Persister organisms have been shown to be metabolically active in RNAseq studies, but are not easily cultivatable and have been challenging to prove. (R)
Antigens may persist after complete eradication of replicating bacteria – which may cause host immune cell activation (via bystander activation pathways).
(In mice, bacterial debris can be visualized after antibiotic treatment despite elimination of the bacteria).
Subtypes of “chronic Lyme” patients
Rebman & Aucott (2020) developed a “schematic” of clinical/research-defined patient subtypes associated with persistent Lyme disease symptoms. (R)
Many of these “subtypes” overlap such that patients may fit multiple subtypes.
- Patient-reported fatigue, pain, cognitive deficits, other symptoms
- Chronic Lyme disease
- Untreated IgG+ and/or IgM+
- ILADS CLD-U
- ILADS CLD-PT
- Other syndromes (CFS & FM)
- Late-Lyme Encephalopathy & Arthritis
- IDSA Post-Treatment Lyme Disease
- Other Non-Lyme Diagnoses
- Abnormal Physical Exam and/or Lab Findings
2 Types of “Chronic Lyme” Symptoms
There are 2 types of “chronic Lyme” symptoms: those that fade after treatment (i.e. reversible) AND those that never go away (i.e. permanent).
These are symptoms that emerge during infection, during treatment, or after treatment – that eventually fade away over time.
For example, you might experience joint pain that emerges during infection and persists for months after treatment – but then completely goes away.
In most cases, temporary symptoms will fade within days, weeks, or months after treatment – but some may even experience recovery after years (due to the fact that nerve damage can heal slowly).
These are symptoms that emerge during infection, during treatment, or after treatment – that do NOT go away ever.
Some permanent symptoms may improve over time (e.g. lessen in severity) and/or your ability to cope with them may improve – but they won’t go away due to irreversibly-induced physiologic damage.
An example: Sudden sensorineural hearing loss (SSHL) or ototoxicity from Borrelia burgdorferi infection or immune overactivation during antibiotic treatment (in response to endotoxins).
“Chronic Lyme” FAQs
Will you develop “permanent” complications from Lyme disease?
Nobody really knows. A lot of it depends on the Lyme infection specifics (severity, duration, site of body, etc.), individual physiology (e.g. immune response, genetics, etc.), and the specific treatment (and your reaction to it).
One person might develop a very severe Borrelia infection and end up with zero permanent adverse effects after treatment – whereas another person might develop a moderately-severe infection yet end up with permanent complications.
People with short-term and/or less severe Lyme disease are probably more likely to have most or all symptoms fade after treatment.
People with long-term and/or severe Lyme disease are probably more likely to experience some permanent complications that never go away after treatment is over.
Note: Certain “symptoms” that one might initially suspect to be permanent may actually be reversible. For example, hyperalgesia and allodynia usually result from CNS sensitization (which may initially seem permanent, but may abate with administration of specific CNS modulators).
How do some people recover from “chronic Lyme” symptoms?
Those who recover from “chronic Lyme” likely have experienced reversible physiological damage from the pathophysiology of Lyme disease and/or antibiotic therapy.
This damage may require weeks, months, or perhaps years (particularly if the damage is neurological) to fully “heal” after a severe infection.
Why do some people never fully recover from “chronic Lyme”?
Those who never fully recover from “chronic Lyme” have endured irreversible physiological damage from Borrelia infection and/or antibiotic therapy.
This damage does NOT heal after weeks, months, or years.
Unfortunately, many of these individuals assume that they’re still “infected” with Lyme disease despite successfully eradicating the bacteria with antibiotics.
Why? Because they still experience “symptoms” that occurred during infection.
A majority of those that end up with irreversible complications had severe (Stage 2 or Stage 3) Lyme prior to treatment – possibly with co-infections and/or Herxheimer-like reactions during treatment.
Will you have permanent or reversible damage?
Every case is unique and depends on the specific individual, severity of disease, and response to antibiotic therapy.
Some individuals may sustain significant permanent damage, whereas others may experience “reversible” damage such that problems eventually resolve within weeks, months, or even years following treatment.
Most people that get treated early in Lyme infection will end up with “reversible” damage.
Certain individuals with “chronic Lyme” benefit from “alternative” therapies, why is this?
First of all – the benefits attained from alternative treatments for Lyme disease are probably NOT derived from “killing” bacteria that linger in the body after conventional antibiotics.
This is a massive misconception that’s somehow still floating around random chiropractor websites, Reddit threads, YouTube comments sections, and forums.
Assuming a medical doctor (MD) prescribed the appropriate antibiotic, at the correct dosage, for the proper duration – and you followed the treatment exactly as prescribed, you should have “killed” the bacteria causing Lyme disease.
Placebo effect: Many people are highly susceptible to placebo effects with alternative interventions. The placebo effect is very powerful and can have a significant effect on one’s physiology.
Time-related physiological changes: Everyone’s physiology changes over time due to environmental factors, aging, habits, etc. The more time that’s passed after Lyme treatment – the more likely your physiology will “normalize” via return to homeostasis.
What should you do if you have “chronic Lyme”?
Below are the things that I would do if I had Post-Lyme Disease Treatment Syndrome (PLDTS) – or symptoms of “chronic Lyme.”
Note: None of this is medical advice.
- Verify with an infectious disease (ID) doctor that your Lyme was properly treated.
- Rule out other tick-borne infections that may explain symptoms (ID doctor).
- Evaluate immune function (immunologist) to ensure no post-Lyme immune dysfunction (e.g. autoimmunity).
- Consider protracted effects of antibiotics (rather than Lyme) may be causing your symptoms.
- Consider a “Lyme literate” medical doctor (?): Although this is regarded as “quackery” by most medical doctors – it might be worth considering at least hearing a proposed treatment protocol for chronic symptoms.
- Healthy lifestyle & repopulation of “gut bacteria”
- Daily exercise (cardio + resistance)
- Balanced diet (healthy carbs, fats, proteins, fiber)
- Supplements (if considered safe by your doctor)
- Medications (if necessary)
- Adequate sleep (cut out all stimulants if you have insomnia)
- Stress reduction (e.g. meditation, yoga, self-hypnosis, etc.)
- Weight modification: Gain if underweight, lose if overweight/obese.
- Immunomodulation (?)
- Inflammation modulation (?)
- Antibiotics + adjuncts: Some people may want to consider another round of antibiotics if there’s evidence of infection that hasn’t been fully eradicated. Work with a medical doctor here to treat prospective infection with proper antibiotic, at correct dosage, for proper duration. Consider adjuncts like: Vitamin C (high-dose); Vitamin D3; NAC (N-Acetyl-Cysteine); and Melatonin.
CNS & Physiology recovery: This is intended to be done once you’re no longer testing positive for B. burgdoferi and/or its antigens. When the bacteria have been eliminated from your system, then you can focus on CNS and physiologic repair.
Columbia Lyme recommends considering the following interventions (R)
- Pain: Gabapentinoids (pregabalin, gabapentin); tricyclic antidepressants (amitriptyline); muscle relaxants (cyclobenzaprine); SNRIs (duloxetine, venlafaxine, milnacipran); NSAIDs; low-dose naltrexone; IV gamma-globulin therapy.
- Arthritis: Methotrexate; hydroxychloroquine.
- Fatigue: Bupropion; Modafinil & Armodafinil; Acupuncture; Mindfulness; Yoga; Mind-Body practices (e.g. Qi-gong)
- Sleep: CBT; Lemon balm; Melatonin; Doxepin; Trazodone; Quetiapine; Mirtazapine; Zolpidem; Lorazepam; Ramelteon; Temazepam; Eszopiclone
- Anxiety & depression: Psychotherapy; SSRIs; SNRIs; Tricyclics; other non-specific antidepressants and anxiolytics.
- Cognitive deficits: Bupropion; Atomoxetine; Modafinil; Methylphenidate; “brain training” programs; Neurofeedback.
Supplements for chronic Lyme disease
You may want to focus on a combination of neuroprotective, neuro-restorative, immunomodulatory, and/or anti-inflammatory supplements after Lyme disease.
These are supplements that I’d consider taking if treated for Lyme disease.
(I’d personally be more likely to try supplements before medications – unless symptoms are downright unbearable.)
Examples of supplements that might help with the aftermath of Lyme:
- Alpha GPC
- Alpha lipoic acid
- Magnesium threonate
- Melatonin (high-dose)
- Vitamin C
- B-Complex vitamin
- Vitamin D
- Omega-3 fatty acids (high dose)
- Prebiotics & Probiotics
- Quercetin & Bromelain
- NAC or Glutathione
- Creatine monohydrate
- Lion’s mane mushroom
- NAD+ (if older age)
- Green tea
- Garlic extract
- Allibiotic (natural antibiotic?)
- Lithium orotate
- Gingko Biloba
Disclosure: These are affiliate links – and help support the site. Cost is exact same.
- Note: Always consult a medical doctor to verify that supplements are safe given your current medical status and medication regimen.
- Note: I am just listing some that might help some individuals. Do NOT combine without verifying safety. Each has specific uses.
Treatment for “Chronic Lyme” (Summarized by Researchers)
There are currently no FDA-approved or commonly agreed upon approaches to treating and/or managing symptom associated with Post-Lyme Disease Treatment Syndrome (PLDTS).
- Longer antibiotic therapy: Some have researched longer antibiotic treatment for patients with “chronic Lyme” and found no significant benefit. Furthermore, there were data suggesting that longer-term antibiotic treatment is actually harmful at the patient (adverse events) and population level (microbial resistance).
- Open-ended antibiotic therapy: The International Lyme & Associated Diseases Society (ILADS) suggest that “open-ended” antibiotic therapy may be beneficial due to the possibility of “persistent infection” and/or potentially multiple tick-borne co-infecting agents. A variety of antibiotics may be used here.
- Pregabalin & duloxetine: May help manage fibromyalgia-type syndromes and/or neuropathies associated with Lyme disease.
- Tricyclic antidepressants: May be beneficial in the management of sleep disturbances and/or chronic pain – resulting from Lyme disease.
- Modafinil, Armodafinil, Caffeine: May be beneficial in the management of chronic fatigue-like syndromes associated with Lyme disease.
- SSRIs: Selective-serotonin reuptake inhibitors may help manage anxiety and/or depression resulting from Lyme disease.
- Cognitive behavioral therapy (CBT): Effective for the management of neuropsychiatric symptoms resulting from Lyme.
- Mindfulness-based stress reduction (MBSR): Helps patients with fibromyalgia and may help those with fibromyalgia-type symptoms resulting from Lyme.
- Resistance training: A supervised resistance training regimen improved symptoms of patients suffering from “chronic Lyme” in a small study.
Lyme Disease warrants additional research
Included below are some aspects of Lyme disease that I think warrant further research.
Lyme disease vaccines: There are no approved vaccines for the prevention of Lyme disease in the United States. Many believe that vaccines warrant development due to the significant healthcare costs and productivity losses resulting from Lyme disease.
Novel antimicrobial therapies: New compounds for the treatment of Lyme disease are warranted. Perhaps newer antimicrobials that are better able to target Borrelia bacteria will eliminate Borrelia and all “persister” material during treatment.
- Hygromycin A
Biomarkers of “chronic Lyme”: Are there any commonalities in terms of biomarkers (e.g. high TNF-alpha) among individuals with “Post-Lyme Disease Treatment Syndrome” (PLDTS)? These may warrant additional investigation.
Persister material: Research indicates that B. burgdorferi (and other Borrelia spp.) can form “persister” organisms due to both antibiotic pressure and stationary phase growth.
- Does the amount or type of persister material correlate with severity of “chronic Lyme” symptoms?
- Are there any potential methods to eliminate the persister material?
- Does eliminating “persister” material result in symptomatic improvement or curative effect?
Final thoughts on “chronic Lyme disease”…
Nothing in this article is intended to downplay the severity of Lyme disease OR diminish anyone’s personal experience with Lyme disease.
It’s merely to point out the fact that what most people consider to be “chronic Lyme” – is not accurate. It’s usually not some eternal, impossible-to-treat infection (assuming appropriate treatments are administered).
Instead, “chronic Lyme” is usually one or more physiological responses that emerge: (1) Lyme infection (prior to treatment); (2) antibiotic therapy (this includes interactions between antibiotics & Lyme & immune function); and (3) psychological state (e.g. mood, stress, etc.).
Some of these physiological responses may be permanent – but most will be “reversible” with adequate time removed from both Lyme infection and Lyme treatment.
It is known that some select patients (10-20%) may NOT respond to conventional Lyme disease treatments (e.g. doxycycline). (R)
In these patients, it is necessary to administer alternative antibiotics, antibiotic combinations, and/or adjunct antimicrobial supplements – to yield a curative effect.
Most medical doctors (MDs) will be able to recognize if a patient hasn’t responded to first-line/conventional therapy for Lyme disease – and will then devise a different antimicrobial regimen.
Have you experienced “chronic Lyme” & Post-Lyme Disease Treatment Syndrome (PLDTS)?
- When did your most severe “symptoms” first start? (Before treatment, during treatment, after treatment – or a combination of all phases?)
- How long do you suspect you were infected with Lyme disease before diagnosis and treatment?
- What was your specific treatment protocol for Lyme disease?
- Did you have any co-infections with Lyme disease?
- Do you have any co-morbid medical conditions?
- What are your most severe symptoms of “chronic Lyme”?
- How long has it been since you completed treatment for Lyme disease?
- Did you rule out immune abnormalities after Lyme treatment?
- Have any of your “chronic Lyme” symptoms improved over time?
- Are you convinced that you’re “still infected” with Lyme disease?
- Did you take any medications and/or supplements that may have interfered with your antibiotic treatment?